Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare disorder caused by genetic mutations affecting collagen, a crucial connective tissue protein. It is one of the 6 major and 13 subtypes of EDS. Its features include elastic and delicate skin and hypermobile joints. Yet, hEDS is not confined to these visible traits; it’s also an invisible illness.
This disorder presents challenges that others don’t see but profoundly impact patients’ daily lives. These may include persistent fatigue, joint dislocation, and chronic pain, which may potentially lead to long-term mobility issues.
While there is no known cure for hEDS, treatment focuses on alleviating specific symptoms. Medical interventions, physical therapy, pain management, and lifestyle adjustments are some of the tools used to help improve the quality of life for those living with hEDS.
In light of these complexities, it’s important to recognize that living with hEDS has constraints and requires constant monitoring on how to stay active, yet safe; a robust support system is invaluable. Here are some essential do’s and don’ts when interacting with hEDS patients.
1. Think they’re just seeking attention. It is important to keep in mind that just because someone does not look sick, it doesn’t mean they’re not suffering. For instance, when the patient articulates their chronic pain symptoms or refuses to get out of bed, it is best to refrain from jumping to conclusions about their motives.
2. Downplay the seriousness of their illness. When we lack knowledge about an illness, it can be challenging for us to fully comprehend its impact on the patient. Most of the time, we unconsciously draw parallels between their symptoms and more familiar occurrences, such as ordinary body aches during a bout of flu.
And since our reference is something simple, we also tend to suggest simplistic solutions, such as taking painkillers or exercising more. This, however, falls short of acknowledging the complex and multi-faceted challenges that individuals with hEDS face. This can inadvertently exacerbate the feelings of being misunderstood that patients often deal with.
3. Assume they’re using their illness to dodge responsibilities. Patients unexpectedly taking sick leave despite feeling well the day before, only to recover fully the next day might be a shock to some people. While they could miss crucial meetings or deadlines, it’s important not to interpret this as a deliberate avoidance tactic due to their condition. It’s simply that they can have really challenging days, which are also difficult to forecast.
4. Make fun of them. Mocking someone with hEDS, or any illness for that matter, should always be avoided irrespective of your level of closeness to the individual. Patients with hEDS often contend with various physical and emotional difficulties on a daily basis and making fun of their health condition can create an environment where they feel isolated, insulted, and misunderstood. Moreover, this can contribute to a lack of awareness and empathy among those who are unfamiliar with the illness.
1. Learn about hEDS. Take the time to educate yourself about hEDS and other invisible illnesses. Understanding these conditions not only helps you offer better support and empathy to those living with them, it is also a powerful tool in breaking down stigmas and misconceptions surrounding these illnesses.
2. Ask permission and offer help. Ask permission about greeting a patient with a hug which may cause a partial dislocation. Also, ask about carrying objects for them or picking up items that drop. Holding items may cause pain and leaning over to a side may cause an “up-slip”.
3. Invite them out, but be flexible. It’s a wonderful gesture if you could invite your friend to join in on activities or outings, but it’s equally important to be understanding and flexible. hEDS can bring unpredictable symptoms and fluctuations in well-being, so there might be times when your friend has to decline or even cancel plans at the last minute. This doesn’t reflect a lack of interest or enthusiasm; it’s simply a part of managing their condition.
By showing patience and empathy during these moments, you create a safe and supportive environment that allows your friend to participate in activities when they can and to prioritize their health when they cannot. Your understanding can strengthen your friendship and make your invitations all the more appreciated.
4. Spread awareness about hEDS. By sharing information, you can contribute to a world where hEDS is recognized and understood, reducing the isolation that patients often experience. Raising awareness also encourages early diagnosis and proper medical care, ultimately improving the quality of life for those affected. Your efforts can make a significant impact in building a more supportive and informed society for those living with hEDS.
hEDS is a complex and often invisible condition that demands our understanding, empathy, and support. While there is no cure for hEDS, our awareness and compassion can significantly improve the lives of those affected. By following these do’s and don’ts, we can create a more inclusive and empathetic world for individuals living with hEDS.
If you or someone you know is affected by Hypermobile Ehlers-Danlos syndrome, we invite you to join our free Ehlers-Danlos Syndrome Support Community so that you could get in touch with people who truly understand what you’re going through.